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Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.
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Published in final edited form as:

Epilepsy Behav. 2016 April ; 57(Pt A): 202–210. doi:10.1016/j.yebeh.2016.02.002.
Predictors of Trajectories of Epilepsy-Specific Quality of Life

among Children Newly Diagnosed with Epilepsy
Rachelle R. Ramsey, Ph.D.a, Kristin Loiselle, Ph.D.a, Joseph R. Rausch, Ph.D.a, Jordan
Harrison, PsyDb, and Avani C. Modi, Ph.D.a
aCenter for Treatment Adherence and Self-Management, Division of Behavioral Medicine and
Clinical Psychology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave., MLC 7039,
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Cincinnati, OH, 45229, USA

bThomas E. Cook Counseling Center, Virginia Tech, 895 Washington St. SW, Blacksburg, VA,
24061, USA
Abstract
Objective—To identify two year trajectories of epilepsy-specific health-related quality of life
(HRQOL) among children newly diagnosed with epilepsy and to evaluate the predictive value of a
comprehensive set of medical, psychosocial, and family factors.
Methods—Ninety-four children with epilepsy (8.14 ± 2.37 years of age and 63% male) and their
caregivers participated in this study. Caregivers completed the Quality of Life in Childhood
Epilepsy Questionnaire (QOLCE) and measures of psychological and family functioning at one
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month post-diagnosis. The QOLCE was also given at eight additional time points during the
subsequent two years as a part of a large observational study in children with epilepsy. Adherence
data was collected via MEMS TrackCaps and medical information was collected through chart
review.
Results—Unique trajectories were identified for the overall QOLCE scale, as well as the
subscales. Most trajectory models for the QOLCE subscales contained at least one at-risk
trajectory for children, indicating that there is a subgroup of children experiencing poor long-term
HRQOL. Health-related quality of life trajectories remained predominantly stable during the two
year period following treatment initiation. Number of AEDs, Internalizing Problems, and
Externalizing Problems emerged as the most consistent predictors across the HRQOL domains.
Significance—Medical and psychosocial interventions, such as cognitive-behavioral strategies,

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should target modifiable factors (e.g., internalizing symptoms, externalizing symptoms, number of
Address correspondence to: Avani Modi, Center for Treatment Adherence and Self-Management, Cincinnati Children’s Hospital
Medical Center, 3333 Burnet Ave., MLC 7039, Cincinnati, OH 45229, phone: 513-636-4864, fax: 513-803-0415,
avani.modi@cchmc.org.
Conflict of Interest: The authors have no conflicts to disclose.
Ethical Publication Statement: We confirm that we have read the Journal’s position on issues involved in ethical publication and
affirm that this report is consistent with those guidelines
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Ramsey et al. Page 2
AEDs trialed) shortly after diagnosis to improve HRQOL for children with epilepsy over the
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course of their disease.
Keywords
epilepsy; quality of life; children; trajectories
1. INTRODUCTION
Health-related quality of life (HRQOL) is a widely accepted health and patient-reported
outcome measure that assesses the impact of an illness and its treatment on functioning[1,
2]. Children with epilepsy are at increased risk for poor HRQOL[3, 4], particularly in the
domains of emotional, behavioral, social, academic, and family functioning[5–10].
Assessing HRQOL in children with epilepsy allows healthcare professionals to have a
broader conceptualization of the impact of epilepsy and antiepileptic drugs (AEDs) on the
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child and to make more informed decisions regarding medication, side effects, and the
child’s overall well-being. While many cross-sectional and longitudinal studies have been
conducted examining HRQOL, few have identified the longitudinal course of HRQOL over
time in children with epilepsy.
One exception is the HERQULES project, a prospective multisite study examining HRQOL
and adherence in children with epilepsy at four points during the two years post-diagnosis.
Ferro and colleagues[11] documented five trajectories of overall HRQOL with the majority
of children being in the moderate-increasing (23%), high-increasing (32%), or high-stable
(29%) trajectory groups. The remaining children were in the moderate-decreasing (12%) or
low-increasing (4%) groups. Most of the children in the moderate-increasing, high-
increasing, and high stable trajectory groups demonstrated clinically meaningful
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improvements in HRQOL over two years, while the children in the moderate-decreasing
group experienced clinically significant declines in HRQOL[11]. The work by Ferro and
colleagues (2013) provides important information regarding overall HRQOL trajectories
over a two year period, but does not provide domain specific information. Establishing
domain-specific trajectories (e.g., depression) may be more helpful in identifying at-risk
patients and determining targets for intervention to improve HRQOL given that interventions
target a particular domain rather than general HRQOL. Another HERQULES study
examined mean scores for the domains of HRQOL (e.g., depression, behavior, stigma) and
found that scores tended to be lowest at baseline and highest two years later[3]. Although
Speechley and colleagues provided domain specific information, longitudinal HRQOL was
examined over time by demonstrating a single, average model of HRQOL over two years,
not trajectories[3]. Building from these two studies, our goal was to establish domain
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specific HRQOL trajectories that would allow providers to identify particular aspects of
HRQOL that need to be targeted with intervention (e.g., cognitive-behavioral therapy for
emotional problems vs. neuropsychological testing for neurocognitive problems). In
addition, identification of the ideal timing regarding the delivery of such interventions is
important.
Previous research has identified a number of predictors of HRQOL in children with epilepsy.
A recent meta-analysis examined 12 risk factors for poor HRQOL in children with epilepsy

and found that more severe seizure characteristics (i.e., type, frequency, severity, duration),
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AED characteristics (i.e., quantity, side effects), presence of a comorbid disorder (e.g.,
behavior, cognitive or emotional difficulties), and family characteristics (i.e., parental
anxiety, socioeconomic status) were associated with poorer HRQOL[12]. Several
longitudinal studies have also documented AED side effects, AED type, seizure
frequency[13], cognitive problems, family demands, and family functioning[3, 14] as
predictors of HRQOL over time. Finally, the one existing study documenting overall
HRQOL trajectories also found that an increased quantity of AEDs, comorbid behavior or
cognitive problems, parent depression, family demands, and family functioning to be
associated with less favorable HRQOL trajectories[11]. It should be noted, however, that the
relative contribution of each predictor to overall HRQOL and QOLCE subscales in a
combined model has not been examined.
The primary objective of this study was to identify two-year trajectories of HRQOL
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following pediatric epilepsy treatment initiation using the Quality of Life in Childhood
Epilepsy Questionnaire (QOLCE), an epilepsy-specific measure of HRQOL. Although
previous studies have established trajectories for the Overall scale of the QOLCE and
demonstrated mean models for the QOLCE subscales, no studies have established
trajectories for the QOLCE subscales in a way that allows providers to identify at-risk
domains of HRQOL and inform intervention type and timing. Our goal was to extend the
literature by documenting trajectory groups across domains using established QOLCE
subscales (e.g., physical restrictions, depression, behavior, memory, social interaction).
Domain-specific HRQOL trajectories across nine time points will allow for the identification
of children in need of a particular intervention at a specific time point. Our secondary aim
was to examine the differential predictive value of medical, psychosocial, and family factors
on domain-specific HRQOL. The recent meta-analysis[12]and existing longitudinal studies
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examining correlates of HRQOL[3, 15] informed the compilation of a comprehensive set of

predictor variables in order to identify the most critical predictors of overall and specific
domains of epilepsy-specific HRQOL.
2. METHODS
2.1 Participants and Procedures
Participants were recruited and enrolled on the day of their epilepsy diagnosis and AED
initiation from the New Onset Seizure Disorder Clinic for a two-year longitudinal study
examining adherence and health outcomes. Parents of children who met the following
inclusion criteria were approached by a trained research assistant: 1) 2–12 years old, 2) same
day epilepsy diagnosis and AED initiation, 3) no comorbid medical conditions requiring
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daily medication, 4) no parent reported developmental disorders, and 5) fluent in English.

This study received prior approval by the hospital Institutional Review Board and caregivers
provided informed consent for each patient.
Caregivers completed a demographics form and received an electronic monitor to measure

adherence to AED therapy. Subsequent study visits coincided with routine clinic
appointments, which occurred approximately 1, 4, 7, 10, 13, 16, 19, 22, and 25-months post
diagnosis. During each visit, electronic monitored adherence data was downloaded and

caregivers completed a battery of questionnaires. The current study examined the following
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parent-reported variables: epilepsy-specific quality of life, socioeconomic status (SES), side

effects, child externalizing and internalizing behaviors, parent fears and concerns, and
general family functioning. Disease-related variables were obtained through medical chart
reviews and parent-report.
2.2 Measures
2.2.1 Demographic and disease characteristics—Background information such as
child age and sex was provided by each primary caregiver via a demographics form. The
Duncan scoring system, an occupation-based measure, was used to compute SES[16].
Scores were calculated for each family and range from 15 to 99, with higher scores
reflecting higher SES.
Disease information such as number of AEDs, seizure type, etiology, and occurrence were
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obtained through medical chart review. Number of AEDs signifies the total number of AEDs
utilized during the two year period. Caregivers completed the 19-item Pediatric Epilepsy
Side Effects Questionnaire (PESQ)[17] regarding AED side effects experienced by the child.
Scores range from 0–100, with higher scores representing more side effects. The PESQ has
strong internal consistency and test-retest reliability[17]. Internal consistency reliability in
this sample was 0.99. Seizure probability trajectory groups indicating the likelihood of
patients having a seizure over the two year study were previously identified and used a
marker of seizure course in this study [18].
2.2.2 AED adherence—Adherence was assessed for the larger study utilizing a MEMS
TrackCap, an electronic monitor that records the date and time the bottle was opened. Data
were downloaded from the TrackCap at each study visit and those data were previously used
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to identify trajectories of AED adherence over the first two years. Four long-term adherence
trajectory groups were identified including Severe Early Non-adherence, Variable Non-
adherence, Moderate Non-adherence, and High Adherence[18] and were utilized in the
current paper.
2.2.3 Epilepsy-specific quality of life—Caregivers completed the Quality of Life in

Childhood Epilepsy Questionnaire (QOLCE), a 79-item parent proxy report of the child’s
quality of life[19]. Scaled scores, ranging from 0–100 with higher scores reflecting better
QOL, were calculated for Total HRQOL and 17 subscales of the QOLCE. For ease of
interpretation, QOLCE subscales are discussed in the following groups: physical domain
[Physical Restrictions (10 items, α = 0.67), Energy/Fatigue (2 items, α = 0.63)], emotional
domain [Depression (4 items, α = 0.63), Anxiety (5 items, α = 0.79), Control/Helplessness
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(4 items, α = 0.67), Self-esteem (5 items, α = 0.72 ], behavioral domain [Behavior (16 items,
α = 0.81), Attention/Concentration (5 items, α =0.90 )], neurocognitive domain [Memory (6
items, α = 0.91), Language (8 items, α = 0.90), Other Cognitive (3 items, α = 0.80)], social
domain [Social Interaction (5 items, α = 0.35), Social Activity (2 items,α =0.77 ), Stigma (1
item)], and overall [General Health (1 item), Quality of Life Item (1 item), and Overall
Quality of Life (92 items, α = 0.95)]. The QOLCE is a well-established measure with good
psychometric properties[19].

2.2.4 Psychological functioning—The Behavior Assessment System for Children-2nd

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Edition (BASC-2)[20] is a reliable and valid measure of behavioral and emotional

difficulties. The parent-proxy version of the Internalizing (e.g., anxiety, depressive
symptoms) and Externalizing (e.g., aggression, oppositional/conduct behaviors,
hyperactivity) subscales were utilized in this study. Individual raw scores were compared to
normative data for children of the same age and resulted in standardized T-scores, with T-
scores above 65 representing at-risk functioning. Cronbach’s alpha ranged from 0.88 – 0.94
for the Internalizing subscale and 0.90–0.93 for the Externalizing subscale.
2.2.5 Parent and family functioning—The 5-item Concerns and Fears subscale of the
Parent Report of Psychosocial Care[21] was used to assess parental fears about the impact of
the child’s seizures. Higher scores indicate a greater level of worry about the child’s
seizures. Parents also completed the McMaster Family Assessment Device. Higher scores on
the general family functioning subscale indicate a poorer level of family functioning.
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Internal consistency reliability for the current sample was 0.83.
2.3 Statistical Analysis

Latent class growth modeling (LCGM) analyses were implemented and missing data were
handled in SAS (version 9.3; SAS Institute, Cary, NC) with the TRAJ procedure (see, e.g,
[22–25]). Specifically, PROC TRAJ employs maximum likelihood estimation, and thus all
available outcome data are used to obtain parameter estimates under the assumption that any
missing data are missing at random (see, e.g., [26]). PROC TRAJ excludes participants from
prediction models when time-invariant covariates are missing [22]. When unobserved
subgroups are anticipated within a longitudinal data set, LCGM can be used to delineate
these subgroups. Based on response variable patterns over time, unobserved groups are
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extracted and participants are assigned to one and only one of the subgroups using
probabilistic estimation techniques. This approach was utilized to extract subgroups from
longitudinal data from each of the QOLCE scales.
All models employed censored normal distributions for the outcome of interest. The number
of groups was selected based on the Bayesian information criterion (BIC) statistic, model
estimation convergence, and sufficient subgroups proportions for each outcome. In
particular, quadratic models for change were analyzed starting with 1 subgroup, 2
subgroups, etc., until the number of subgroups was sufficiently large that the model did not
converge within PROC TRAJ. From the available models, each with a different number of
groups, a model with any subgroup proportions < .05 was not considered further. The
remaining models were compared with respect to BIC to determine the optimal number of
subgroups. Linear and quadratic models for change were compared via the BIC for the
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model with the optimal number of subgroups. In order to examine how well the subgroup
solution fit the data via how definitively participants were assigned to the subgroups, average
posterior probabilities were examined for the LCGMs.
After establishing the appropriate number of groups and trajectory group shapes within the
LCGM for a given QOLCE subscale, trajectory group status was then predicted with an
ordinal logistic regression using the LOGISTIC procedure in SAS with the following

covariates entered simultaneously: adherence group status[27], seizure group status[27], side
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effects, SES, number of AEDs, internalizing problems, externalizing problems, parental

worries, family functioning, and seizure type. To balance Type I and Type II errors in this
study of multiple outcomes and multiple covariates, statistical significance for all
significance tests was defined as p < 0.05.
3. RESULTS
3.1 Participants
There were 111 eligible families (children with epilepsy and a parent) that were approached
for study participation. Five families declined participation due to time constraints (95%
recruitment rate). One participant was found to be ineligible after informed consent was
obtained (due to simultaneous diagnosis of a pervasive developmental disorder). One
hundred and five participants agreed to participate in our larger study, which included
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children 2–12 years of age. Ninety-four (94/105 = 90%) of these participants completed
baseline measures based on our age-eligibility (e.g. 4 years and older necessary to complete
the QOLCE) for the current study. Eighty-four participants (84/105 = 80%) completed the
final assessment. Participants were not required to complete all time points in order to
complete a final assessment. Participation rates at each assessment were as follows: 79% (4
months), 82% (7 months), 79% (10 months), 78% (13 months), 67% (16 months), 64% (19
months), 48% (22 months), and 80% (final assessment). Missing data is due to the following
reasons: stopped receiving care at the NOS clinic (35%), missed appointment or did not
complete measures (21%), withdrew from the study (16%), and planned missed appointment
due to good clinical progress (13%).
Baseline characteristics for participants completing the initial assessment and those who
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completed the final assessment can be found in Table 1. Group differences were examined
based on those who completed the 1 month visit (n = 94) vs those who completed the 25
month visit (n = 84). Participants who completed the final assessment were more likely to be
male (F(1, 92) = 4.36, p = .04). No other significant differences were found with regard to
demographic (e.g., age, socioeconomic status) or medical (e.g., seizure type, initial drug
therapy) variables.
3.2 Determining QOLCE Trajectories

Latent class growth modeling analyses (Table 2) resulted in final subgroup growth model
trajectories for each subscale and overall HRQOL. The trajectories are shown in Figure 1
and trajectory group percentages can be found in Table 2.
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Trajectories were classified based on the intercept and slope of HRQOL over the 2-year
period. Means and standard error of measurement (SEM) scores previously calculated for
the QOLCE[3] were used to develop the trajectory labels (see Table 3 for the mean, standard
deviation, and SEM of each subscale). A trajectory was labeled as “Moderate” if the
intercept was within one SEM of the mean from the previous sample [3]. “High” was used if
the trajectory intercept was greater than one SEM above the previous mean, while
“Superior” was used if the trajectory was greater than two SEMs above the previous mean.
Conversely, trajectories were labeled “Fair,” “Poor,” or “Very Poor” if the trajectory

intercept was one, two, or three SEMs below the mean, respectively. A similar naming
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strategy was implemented for one item scales where no SEMs were available.
Table 2 and Figure 1 provide specific information regarding trajectory analyses and
percentage of children in each trajectory. For clinical purposes and ease of understanding,
the percentage of at-risk children is also described in the text. While three stable trajectories
emerged for Physical Restrictions and Energy/Fatigue (i.e., Superior/High, Moderate, Fair/
Poor) trajectories of emerged, approximately 30% of children were at risk and fell in the Fair
or Poor trajectory groups.
The emotional HRQOL domain subscales of Depression, Anxiety, Control/helplessness, and

Self-esteem each demonstrated three to four distinct trajectories (i.e., Superior/High,
Moderate, Fair/Poor). Most trajectories did not change over time, with the exception of the
Poor-Moderate Anxiety trajectory and the High-Superior Self-esteem trajectory and 11–17%
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of children fell in the Fair or Poor trajectory groups on the emotional domain subscales.
For the more behaviorally oriented subscales (i.e., Behavior, Attention/Concentration),

Superior, Moderate, and Poor trajectories were demonstrated consistently. The Attention/
Concentration subscale had one additional trajectory highlighting a High level of HRQOL.
The behavioral HRQOL trajectories did not significantly change over time.
Four to five trajectories were established for the Neurocognitive subscales (i.e., Memory,
Other Cognitive, Language). Many children with epilepsy demonstrated neurocognitive
difficulties with 46% in the Fair or Poor trajectories on the Memory subscale and 31% in the
Poor or Extremely Poor trajectories for Language. These trajectories were persistent over
time with the exception of the increasing High-Superior Other Cognitive (e.g., had difficulty
solving problems, had difficulty making decisions) trajectory.
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The social subscales of the QOLCE each produced only two trajectories. All of the
participants were in a Moderate or Superior/High-superior trajectory group for Social
Activities and Stigma while 79% percent of participants were in the Poor trajectory group
for Social Interaction.
Stable Superior, High, Fair, and Poor trajectories were established for Overall QOL with
40% of children in the Fair or Poor trajectory. The General Health subscale and the QOL
Item demonstrated consistent Superior, Moderate, and Fair trajectories. The QOL item
demonstrated an additional Moderate-Superior trajectory.
3.3 Predictors of QOLCE Trajectories

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The results for predictors of QOLCE trajectories are displayed in Table 4. Number of AEDs
prescribed over the study period was a significant predictor of the physical (i.e., Physical
Restrictions, Energy/Fatigue), emotional (i.e., Depression, Anxiety, Control/Helplessness),
social (i.e., Social Activity), neurocognitive (i.e., Memory, Other Cognitive) and overall
domains (i.e., QOL item, General health, and Overall). Internalizing problems significantly
predicted trajectories for the physical (i.e., Energy/Fatigue) emotional (i.e., Depression,
Anxiety) and overall domains (i.e., QOL item, General health item, Overall HRQOL).
Externalizing problems was a significant predictor of physical (i.e., Energy/Fatigue),

emotional (i.e., Energy/Fatigue, Self-Esteem, Depression, Control/Helplessness), behavioral

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(i.e., Attention/Concentration, Behavior) and neurocognitive (i.e., Memory, Other Cognitive)

domains of HRQOL. Side effects from AED treatment, seizure type, and general family
functioning predicted trajectories for several subscales within the social domain.
Specifically, seizure type predicted both Social Interaction and Stigma while family
functioning predicted the Social Interaction and side effects predicted Stigma. Finally, AED
adherence trajectories were a significant predictor on the Depression subscale.
4. DISCUSSION
The current study highlights the variability in HRQOL trajectories in children with newly
diagnosed epilepsy over the initial two years following diagnosis and AED initiation.
Establishing predictive trajectory models allows clinicians to identify children at risk for
decreased HRQOL and provide recommendations regarding necessary interventions at
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optional time points. Across a majority of the HRQOL scales, four unique trajectories were
identified, which typically included Superior, High, Moderate, and Fair/Poor courses of
HRQOL. Nearly all of the subscales revealed at least one at-risk trajectory (i.e., Fair, Poor,
Very poor) suggesting that a subset of children with epilepsy have decreased quality of life.
Forty percent of children with epilepsy fell in at-risk trajectories for overall HRQOL and up
to 78% of children were in an at-risk trajectory across subscales. Interestingly, many of the
trajectories appeared stable over time. Post-hoc analyses revealed that the median number of
at-risk subscales was three and that 12% of children with epilepsy were at risk on more than
half of the subscales, suggesting that children with epilepsy are struggling in multiple
aspects of daily functioning. When compared to the work of Ferro and colleagues
establishing HRQOL trajectories for the Overall scale, our data bear some consistency[11].
Ferro et al (2013) identified five unique trajectories compared to our four trajectories and
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there was overlap in two of the five groups (e.g., superior/high stable and moderate
increasing/fair). Although sample characteristics are quite similar (e.g., 4–12 year age range,
newly diagnosed, pediatric subspecialty care), potential differences in findings could be
attributed to healthcare system and usage differences between the US and Canada [28–30].
Number of AEDs was the most consistent predictor across the HRQOL domains (i.e.,
physical, emotional, neurocognitive, social) and of overall HRQOL. Current number of
AEDs prescribed has been found to be a significant predictor of overall HRQOL in previous
research[11]; however, it should be noted that in this study number of AEDs represents the
quantity of AEDs trialed during the two year period, not polytherapy. Given that medications
are typically only altered due to continued seizures or intolerable medication side effects,
children who have trialed an increased number of AEDs likely have a more complex disease
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presentation. Interestingly, seizure probability trajectories and medication side effects were
not significant predictors of any of the HRQOL domains (with the exception of side effects
being a significant predicator of Stigma) when included in the model, which is contrary to
previous longitudinal studies[13]. Given that number of AEDs trialed is a clinical decision
variable influenced by seizure control, medical history, and medication side effects, it is
possible that this variable captures the complexity of the disease in a unique way that is not
captured by side effects or seizure frequency alone.

Internalizing Problems were also predictive of overall and emotional HRQOL. These
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findings are consistent with previous research documenting increased rates of both
depression (21–26%;[7] and anxiety (5–49%)[31, 32] in children with epilepsy with
subsequent negative impact on HRQOL[7]. The significant relationship between
Internalizing Problems and the emotional domain of the QOLCE is not surprising given the
overlapping content between the BASC-2 (utilized to assess Internalizing Problems) and the
QOLCE. The identification of a modifiable factor such as Internalizing Problems that
predicts HRQOL domains allows for the selection of focused psychosocial interventions.
Cognitive-behavior therapy (CBT) may be one viable solution for the treatment of
internalizing problems such as anxiety and depression in children with epilepsy [33, 34].
Meanwhile, Externalizing Problems predicted trajectories of emotional, behavioral, and

neurocognitive domains, but not overall HRQOL. In contrast, previous studies have
demonstrated a significant relationship between behavioral and cognitive comorbidities with
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poorer overall HRQOL[11, 12]. Differing results may be the result of using an objective
validated assessment tool to assess externalizing behaviors compared to a single-item
physician-reported rating of behavior or cognitive problems. This finding, however,
highlights the importance of assessing for domain-specific deficits in HRQOL that may not
be apparent from an overall assessment of HRQOL. Given that approximately one-third of
children with epilepsy are impacted by externalizing disorders (e.g., attention-deficit/
hyperactivity disorder, oppositional defiant disorder) [35] and the relationship between
externalizing problems and emotional, behavioral, and neurocognitive domains of HRQOL,
treatment focused on decreasing externalizing problems in the home and school settings is
imperative. Evidence-based treatment for externalizing disorders includes parent-based
behavioral treatment targeting behavioral principles and contingency management, age-
appropriate supervision, and problem-solving skills[36, 37]. Providers should assess for
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behavioral and attention difficulties in children with epilepsy and recommendations for
neuropsychological testing or the implementation of evidence-based interventions should be
provided as soon as difficulties are noted. Obtaining a neuropsychological evaluation could
provide parents and educators with information about the child’s strengths and weaknesses
and inform interventions to improve academic outcomes[38]. If warranted based on
neuropsychological testing results, ideal interventions for externalizing behaviors may
include parent training or school-based accommodations, such as 504 plans or
Individualized Education Plans[39, 40].
Several other medical and family variables emerged as significant predictors of HRQOL
subscales. For example, in addition to number of AEDs, side effects, seizure type, and
family functioning were also predictive of group status on the social subscales. Children
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taking AEDs often experience significant side effects such as weight gain, fatigue, cognitive
difficulties, and behavioral problems. Each of these side effects has the potential to impact a
child’s ability to initiate or maintain friendships. It is possible that in addition to social
interference by AED side effects, children with epilepsy may not have the opportunity to
engage in some social or extracurricular activities due to physical restrictions. Previous
research has demonstrated that children with epilepsy have poorer social skills than healthy
controls[41] and results of this study indicating that 79% percent of participants fall in the
Poor trajectory group on the Social Interaction subscale support this idea. Interventions

aimed to improve family functioning or stigma-reduction interventions such as

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psychoeducation, cognitive restructuring, and acceptance and commitment therapies [42]

may be beneficial for children with a poor social interactions trajectory.
Finally, adherence trajectory group status was also a significant predictor of Depression
trajectory with children in the Early Severe Non-adherence group being more likely to have
increased levels of depression than individuals in the Variable Non-adherence, Moderate
Non-adherence, and High Non-adherence groups. This relationship between adherence and
depression in children with epilepsy has been documented within the larger adherence
literature[43, 44] and is important given that interventions such as problem-solving exist to
improve medication adherence in children[45]. As noted previously, HRQOL depressive
symptoms could also be addressed through Cognitive-Behavioral Therapy.
This study, however, is not without limitations. First, the significant relationships between
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Internalizing Problems (BASC-2) and emotional HRQOL (QOLCE) and Externalizing

Problems (BASC-2) and behavior HRQOL (QOLCE) may be the result of shared variance
between these scales; however, this data provides support for the convergent validity of these
scales. Second, this study included children age 2–12 years and results are not generalizable
to adolescents with epilepsy. Additionally, parents provided information regarding epilepsy-
specific HRQOL because of the young age of study participants. Future studies may
consider a larger developmental range with assessment of the child’s perspective of their
own HRQOL. Third, there was attrition across the course of this two-year longitudinal study,
which may limit generalizability. Another limitation of the study is the poor internal
consistency reliabilities on a few of the QOLCE subscales; however, many of these
subscales are above the criterion generally accepted as adequate (i.e., >.70) [46]. Finally, we
were not able to examine the predictive value of two previous established predictors of
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HRQOL, maternal depression and cognitive problems; however, it is a strength of this paper
that behavior problems was measured with a well validated assessment tool.
5. CONCLUSIONS
This study provides a comprehensive predictive model of two-year trajectories of overall,
physical, emotional, behavioral, social, and neurocognitive HRQOL for children following
pediatric epilepsy treatment initiation. Results extend the literature by documenting
trajectory groups across a variety of HRQOL domains and by delineating significant
predictors of various domains of HRQOL. Clinicians can use these predictive trajectory
models to identify children at risk for decreased HRQOL and provide recommendations
regarding necessary interventions and optimal timing for the delivery of such interventions.
Assessing for specific domains of HRQOL will allow for the identification of children with
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epilepsy who may have be at-risk in one or more HRQOL domains, but not overall HRQOL.
Future research should focus on the efficacy of interventions to improve externalizing and
internalizing problems and adherence in children with epilepsy and as a result improve
HRQOL.

Acknowledgments
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Funding: Supported by a grant from the National Institutes of Health (K23HD057333) awarded to Dr. Modi and a
training grant from the National Institutes of Health supporting Drs. Loiselle and Ramsey (T32HD068223).
Abbreviations
AED antiepileptic drug

HRQOL health-related quality of life
SES socioeconomic status
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Highlights
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• 40% of children with epilepsy fell in at-risk trajectories for overall health-related
quality of life (HRQOL).
• Most subscale models contained at least one at-risk trajectory containing up to

78% of children with epilepsy.
• Many of the HRQOL trajectories appeared stable during the two years following
epilepsy diagnosis and AED treatment initiation.
• Number of AEDs, Internalizing Problems, and Externalizing Problems emerged

as the most consistent predictors across the HRQOL domains.
• Medical and psychosocial interventions should target modifiable factors shortly

after diagnosis to improve HRQOL for children with epilepsy.
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Figure 1.
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Table 1
Participant Characteristics
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Baseline (n = 94) 25 monthsa (n = 84)

Factor M SD
Child age (years) 8.14 2.37 7.16 2.73
Family Duncan scoreb 53.15 19.95 55.54 20.16
n % n %
Child sex
Male 59 63 50 59.5
Child race
White 68 72.3 65 77.4
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Black 18 19.1 13 15.5

Biracial 5 5.3 4 4.8
Other 3 3.1 2 2.4
Child epilepsy diagnosis
Idiopathic 76 80.9 69 82.2
Localization-related 39 41.5 40 47.6
Generalized 22 23.4 17 20.2
Unclassified 15 16 12 14.3
Cryptogenic 12 12.8 11 13.1
Symptomatic 6 6.4 4
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Child initial antiepileptic drug therapy
Carbamazepine 51 54.3 51 60.7
Valproic acid 43 45.7 33 39.3
Parent relationship to child
Mother 79 84.0 70 83.3
Parent marital status
Married 62 66.0 56 66.7
a
Baseline participant data is utilized for the 25 month assessment report to ensure comparability
b
Associated with occupations such as property managers, physician’s assistants, mail carriers, sheriffs/law enforcement, and fire prevention
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Table 2
Final Trajectory Models for QOLCE overall and subscales

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Group (%) Parameter Estimate (95% CI) t p
QOLCE Physical Restrictions (k = 3)
Int 84.4 (77.0 – 91.8) 22.43 <.001

Superior (8.6) Linear 7.41 (2.71 – 12.11) 3.08 .002
Quadratic −0.798 (−1.390 – −0.206) −2.64 .009
Int 68.2 (65.1 – 71.3) 43.20 <.001

Moderate (58.6) Linear 3.61 (1.81 – 5.41) 3.91 <.001
Quadratic −0.324 (−0.538 – −0.110) −2.96 .0032
Int 55.5 (51.3 – 59.7) 26.11 <.001

Fair (32.9) Linear −0.91 (−3.18 – 1.36) −0.78 .44
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Quadratic 0.145 (−0.129 – 0.419) 1.03 .30
QOLCE Depression (k = 3)
Int 87.2 (84.4 – 90.0) 60.28 <.001

Superior (38.6) Linear 2.21 (0.41 – 4.01) 2.41 .02
Quadratic −0.241 (−0.457 – −0.025) −2.19 .03
Int 80.9 (78.3 – 83.5) 60.24 <.001

Moderate (49.8) Linear −0.81 (−2.24 – 0.62) −1.12 .26
Quadratic 0.095 (−0.076 – 0.266) 1.09 .28
Int 62.6 (57.1 – 68.1) 22.34 <.001

Poor (11.6) Linear 0.01 (−2.95 – 2.97) .01 >.99
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Quadratic 0.072 (−0.289 – 0.433) .39 .70
QOLCE Anxiety (k = 4)
Int 94.3 (86.7 – 101.9) 24.33 <.001

Superior (11.7) Linear 4.98 (0.16 – 9.80) 2.02 .04
Quadratic −0.334 (−0.951 – 0.283) −1.06 .29
Int 83.3 (79.8 – 86.8) 45.96 <.001

High (54.2) Linear −0.77 (−2.75 – 1.21) −0.76 .44
Quadratic 0.145 (−0.098 – 0.388) 1.18 .24
Int 76.8 (68.3 – 85.3) 17.74 <.001

Moderate (18.4) Linear −2.95 (−6.73 – 0.83) −1.53 -.13
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Quadratic 0.193 (−0.332 – 0.718) 0.72 .47
Int 55.4 (47.4 – 63.4) 13.46 <.001

Poor-Moderate (15.7) Linear −1.81 (−5.48 – 1.86) −0.97 .33
Quadratic 0.448 (−0.001 – 0.897) 1.96 .051

QOLCE Energy/Fatigue (k = 3)
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Int 81.1 (71.4 – 90.8) 16.35 <.001

High (18.1) Linear 4.03 (−0.79 – 8.85) 1.64 .10
Quadratic −0.455 (−1.008 – 0.098) −1.62 .11
Int 63.8 (56.4 – 71.2) 16.99 <.001

Moderate (52.6) Linear 3.13 (0.44 – 5.82) 2,29 .02
Quadratic −0.306 (−0.635 – 0.023) −1.82 .07
Int 46.0 (39.0 – 53.0) 12.89 <.001

Poor (29.3) Linear 0.53 (−2.80 – 3.86) 0.31 .75
Quadratic −0.025 (−0.436 – 0.386) −0.12 .91
QOLCE Control/Helplessness (k = 4)
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Int 85.7 (78.8 – 92.6) 24.59 <.001

Superior (15.1) Linear 3.38 (−0.11 – 6.87) 1.90 .06
Quadratic −0.256 (−0.677 – 0.165) −1.19 .24
Int 76.1 (71.5 – 80.7) 32.70 <.001

High (37.4) Linear 2.08 (−0.29 – 4.45) 1.72 .09
Quadratic −0.285 (−0.557 – −0.013) −2.05 .04
Int 65.5 (60.2 – 70.8) 24.68 <.001

Moderate (30.5) Linear −0.25 (−3.11 – 2.61) −0.17 .87
Quadratic 0.152 (−0.203 – 0.507) 0.84 .40
Int 53.3 (47.6 – 59.0) 18.19 <.001

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Poor (17.0) Linear −0.19 (−3.78 – 3.40) −0.10 .92

Quadratic 0.053 (−0.390 – 0.496) 0.23 .82
QOLCE Self-Esteem (k = 4)
Int 87.9 (81.6 – 94.2) 27.78 <.001

High-Superior (11.0) Linear 5.72 (0.92 – 10.52) 2.34 .02
Quadratic −0.638 (−0.08 – −1.20) −2.23 .03
Int 84.7 (81.8 – 87.6) 57.67 <.001

High (53.1) Linear −0.87 (−2.56 – -.82) −1.01 .31
Quadratic 0.115 (−0.089 – 0.319) 1.11 .27
Int 70.5 (65.4 – 75.6) 26.84 <.001

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Moderate (25.5) Linear −0.79 (−3.30 – 1.72) −0.62 .31

Quadratic 0.116 (−0.188 – 0.420) 0.75 .27
Int 54.8 (48.5 – 61.1) 16.86 <.001

Poor (10.4) Linear −0.86 (−4.66 – 2.94) −0.44 .66
Quadratic 0.215 (−0.259 – 0.689) 0.89 .37

QOLCE Behavior (k = 3)
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Int 83.5 (79.4 – 87.6) 40.35 <.001

Superior (20.8) Linear 1.06 (−1.23 – 3.35) .91 .36
Quadratic −0.053 (−0.329 – 0.223) −0.38 .71
Int 68.3 (65.6 – 71.0) 49.32 <.001

Moderate (60.2) Linear 0.40 (−0.99 – 1.79) .57 .57
Quadratic 0.015 (−0.150 – 0.180) .17 .86
Int 53.3 (47.2 – 59.4) 17.44 <.001

Poor (19.0) Linear −0.94 (−3.57 – 1.69) −0.70 .48
Quadratic 0.039 (−0.292 – 0.370) 0.23 .82
QOLCE Attention/Concentration (k = 4)
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Int 96.4 (87.9 – 104.9) 22.21 <.001

Superior (16.9) Linear 4.68 (−0.59 – 9.95) 1.74 .08
Quadratic −0.460 (−1.111 – 0.191) −1.39 .17
Int 75.8 (69.5 – 82.1) 23.46 <.001

High (33.0) Linear 0.56 (−2.95 – 4.07) .32 .76
Quadratic 0.038 (−0.385 – 0.461) .18 .86
Int 62.3 (57.3 – 67.3) 24.30 <.001

Moderate (41.0) Linear −2.02 (−4.94 – 0.90) −1.36 .18
Quadratic 0.179 (−0.180 – 0.538) .98 .33
Int 21.7 (11.8 – 31.6) 4.33 <.001

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Poor (9.1) Linear 3.27 (−2.49 – 9.03) 1.12 .27

Quadratic −0.295 (−0.989 – 0.399) −0.83 .41
QOLCE Memory (k = 4)
Int 95.1 (85.3 – 104.9) 18.94 <.001

Superior (14.1) Linear 6.51 (1.04 – 11.98) 2.33 .02
Quadratic −0.704 (−1.365 – −0.043) −2.09 .04
Int 76.4 (71.1 – 81.7) 28.36 <.001

Moderate (39.9) Linear 0.95 (−2.07 – 3.97) 0.62 .54
Quadratic −0.060 (−0.419 – 0.299) −0.33 .74
Int 61.2 (56.6 – 65.8) 26.12 <.001

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Fair (40.0) Linear −1.66 (−4.54 – 1.22) −1.13 .26

Quadratic 0.137 (−0.222 – 0.496) 0.75 .45
Int 43.2 (29.7 – 56.7) 6.26 <.001

Poor (6.0)
Linear −9.28 (−16.30 – −2.26) −2.60 .01


Quadratic 1.086 (0.253 – 1.919) 2.55 .01
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QOLCE Other Cognitive (k = 5)
Int 115.7 (93.9 – 137.5) 10.40 <.001

Superior (6.0) Linear 7.71 (−4.32 – 19.74) 1.26 .21
Quadratic −1.318 (−2.772 – 0.136) −1.78 .08
Int 77.7 (68.8 – 86.6) 17.03 <.001

High (22.3) Linear 3.33 (−1.94 – 8.60) 1.24 .22
Quadratic 0.042 (−0.658 – 0.742) 0.12 .91
Int 71.7 (65.9 – 77.5) 24.26 <.001

Moderate 1 (39.0) Linear 0.73 (−2.70 – 4.16) 0.42 .67
Quadratic −0.108 (−0.522 – 0.306) −0.51 .61
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Int 58.9 (51.6 – 66.2) 15.95 <.001

Moderate 2 (27.5) Linear −2.50 (−6.36 – 1.36) −1.27 .20
Quadratic 0.207 (−0.289 – 0.703) 0.82 .41
Int 17.1 (4.9 – 29.3) 2.76 .006

Poor (5.4) Linear 0.34 (−6.93 – 7.61) 0.09 .93
Quadratic −0.070 (−1.598 – 0.198) −0.15 .88
QOLCE Language (k = 4)
Int 91.8 (83.8 – 99.8) 22.4 <.001

Superior (19.4) Linear 4.85 (0.01 – 9.69) 1.97 .05
Quadratic −0.350 (−0.962 – 0.262) −1.12 .26
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Int 75.1 (71.0 – 79.2) 35.61 <.001

Moderate (49.1) Linear 0.00 (−2.47 – 2.47) 0.001 >.99
Quadratic 0.145 (−0.153 – 0.443) 0.95 .34
Int 60.7 (53.5 – 67.9) 16.65 <.001

Poor (21.8) Linear −1.30 (−5.06 – 2.46) -.068 .50
Quadratic −0.042 (−0.501 – 0.417) −0.18 .86
Int 31.4 (20.9 – 41.9) 5.86 <.001

Extremely Poor (9.7) Linear −2.17 (−7.85 – 3.51) −0.75 .45
Quadratic 0.315 (−0.363 – 0.993) 0.91 0.36
QOLCE Social Interaction (k = 2)

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Int 86.2 (78.9 – 93.5) 23.10 <.001

Moderate (21.2) Linear −1.23 (−5.60 – 3.14) −0.55 .58
Quadratic 0.077 (−0.462 – 0.616) 0.28 .78
Poor (78.8) Int 63.3 (60.0 – 66.6) 37.31 <.001


Linear −0.16 (−2.02 – 1.70) −0.17 .87
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Quadratic −0.038 (−0.265 – 0.189) −0.32 .75
QOLCE Social Activity (k = 2)
Int 101.6 (93.6 – 109.6) 24.72 <.001

High (47.0) Linear 12.62 (6.39 – 18.85) 3.98 <.001
Quadratic −1.089 (−0.299 – −1.879) −2.70 .007
Int 82.7 (75.8 – 89.6) 23.42 <.001

Moderate (53.0) Linear 0.38 (−3.58 – 4.34) .19 .85
Quadratic 0.077 (−0.399 – 0.553) .32 .75
QOLCE Stigma Item (k = 2)
Int 127.5 (113.4 – 141.6) 17.62 <.001

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Superior (67.3) Linear 7.32 (−1.36 – 16.00) 1.65 .10

Quadratic −0.670 (−1.744 – 0.404) −1.22 .22
Int 79.4 (63.5 – 95.3) 9.81 <.001

Moderate (32.7) Linear −0.56 (−8.64 – 7.52) −0.14 .89
Quadratic 0.310 (−0.697 – 1.317) 0.60 .55
QOLCE General Health (k = 3)
Int 96.2 (43.9 – 148.5) 3.60 <.001

Superior (17.3) Linear 8.04 (0.04 – 16.04) 1.97 <.05
Quadratic −1.1 (−2.26 – 0.15) −1.71 .09
Int 67.6 (44.9 – 90.3) 5.82 <.001

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Moderate (49.2) Linear 4.96 (−0.61 – 10.53) 1.74 .08

Quadratic −0.355 (−1.008 – 0.298) −1.07 .29
Int 49.5 (36.0 – 63.0) 7.18 <.001

Fair (33.5) Linear 2.99 (−2.91 – 8.89) .99 .32
Quadratic −0.202 (−0.853 – 0.449) -.61 .54
QOLCE QOL Item (k = 4)
Int 187.5 (106.7 – 268.3) 4.55 <.001

Superior (13.6) Linear −29.27 (−59.73 – 1.19) −1.88 .06
Quadratic 2.453 (−0.326 – 5.232) 1.73 .08
Int 70.4 (61.2 – 79.6) 15.12 <.001

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Moderate to Superior
Linear 16.86 (10.49 – 23.23) 5.19 <.001
(23.6)
Quadratic −1.534 (−2.334 – −0.734) −3.76 <.001
Int 75.0 (63.4 – 86.6) 12.61 <.001

Moderate (37.6)
Linear 0.77 (−4.42 – 5.96) .29 .77


Quadratic 0.016 (−0.574 – 0.606) .05 .96
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Int 58.7 (49.5 – 67.9) 12.58 <.001

Poor (25.2) Linear −1.98 (−7.74 – 3.78) −0.67 .50
Quadratic 0.323 (−0.336 – 0.982) 0.96 .34
QOLCE Overall (k = 4)
Int 81.6 (79.4 – 83.8) 71.42 <.001

Superior (26.1)
Linear 0.99 (0.52 – 1.46) 4.19 <.001
Int 77.9 (75.9 – 79.9) 75.15 <.001

High (33.7)
Linear −0.13 (−0.58 – .32) −0.57 .57
Int 65.9 (63.9 – 67.9) 64.02 <.001

Fair (29.0)
Linear 0.32 (−0.13 – 0.77) 1.37 .17
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Int 52.7 (48.6 – 56.8) 25.06 <.001

Poor (11.1)
Linear 0.28 (−0.46 – 1.02) .74 .46
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Table 3
Baseline Means, SDs, and SEMs from current and previous samples
Subscale Current Mean Current SD Previous Mean[3] Previous SD[3] Speechley SEM[3]
Ramsey et al.
Physical Restrictions 65.00 16.12 62.53 18.48 8.24
Depression 80.83 11.78 78.03 12.47 6.71
Anxiety 77.51 16.07 70.37 16.43 7.80
Energy/Fatigue 60.11 21.08 60.43 19.26 9.33
Control/Helplessness 70.19 17.06 67.74 16.91 8.63
Self-Esteem 77.24 15.03 75.66 14.30 7.84
Behavior 69.40 13.23 67.55 14.77 5.74
Attention/Concentration 67.23 24.18 63.13 24.35 7.62
Memory 69.73 19.79 67.83 22.64 6.89
Other Cognitive 66.08 22.08 62.99 24.10 9.36
Language 69.90 22.00 70.83 22.46 5.94
Social Interaction 67.48 16.19 83.83 21.22 8.28
Social Activities 82.89 19.45 78.64 24.73 9.68
Stigma 84.51 22.19 77.16 27.78 -
General Health 62.77 24.52 61.41 26.78 -
QOL Item 71.54 20.93 72.99 22.90 -
Overall 71.44 11.07 70.24 13.87 4.01

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Table 4
Results for QOLICE Scales Requiring Ordinal Logistic Regression Model
Physical Restrictions Depression Anxiety Energy/Fatigue Control/Helplessness

Ramsey et al.
Predictors χ2 P OR (95% CI) χ2 P OR (95% CI) χ2 p OR (95% CI) χ2 p OR (95% CI) χ2 p OR (95% CI)
SES 0.02 .89 1.03 .31 - 2.11 .15 - 0.02 .90 - 1.51 .22 -
# of AEDs 7.55 .01 3.36 (1.42, 7.97) 4.73 .03 2.71 (1.10, 6.66) 6.28 .01 2.80 (1.25, 6.26) 7.07 .01 3.08 (1.34, 7.06) 6.88 .01 2.78 (1.30, 5.96)
Side Effects 0.27 .60 - 0.28 .60 - 0.21 .65 - 0.06 .81 - 0.08 .78 -
Seizuresa 0.10 .75 - 0.10 .75 - 0.58 .45 - 0.03 .86 - <.01 .98 -
Adherence 0.45 .93 - 8.66 .03 *** 3.89 .27 - 2.66 .45 - 0.74 .86 -
Internalizing Problems 0.11 .74 - 4.56 .03 1.07 (1.01, 1.14) 6.79 .01 1.09 (1.02, 1.16) 8.01 .01 1.09 (1.03, 1.16) 2.67 .10 -
Externalizing Problems 3.79 .05 1.05 (1.00,1.11) 4.86 .03 1.07 (1.01, 1.13) 0.70 .40 - 7.07 .03 0.94 (0.90, 0.99) 8.49 .003 1.08 (1.02, 1.13)
Parental Worry 2.06 .15 - 0.27 .60 - 0.20 .66 - 1.60 .21 - <.01 .98 -
Family Functioning 0.20 .66 - 0.55 .46 - 2.33 .13 - 0.64 .42 - 0.18 .67 -
Seizure Type 0.27 .60 - 0.29 - 0.40 .53 - 1.14 .28 - 0.35 .55 -
Self-Esteem Behavior Attention/concentration Memory Other Cognitive
Predictors χ2 P OR (95% CI) χ2 P OR (95% CI) χ2 p OR (95% CI) χ2 p OR (95% CI) χ2 p OR (95% CI)
SES 0.14 .70 - 1.67 .20 - 0.01 .91 - 0.05 .82 - 0.11 .75 -
# of AEDs 0.44 .51 - 1.29 .26 - 1.20 .27 - 5.59 .02 2.60 (1.18, 5.72) 11.92 .001 4.04 (1.83, 8.93)
Side Effects 0.54 .46 - 0.77 .38 - 0.14 .71 - 1.47 .23 - 1.88 .17 -
Seizures 0.38 .54 - 0.84 .36 - 0.79 .37 - 0.01 .91 - 0.06 .81 -
Adherence 2.29 .51 - 2.20 .53 - 4.85 .18 - 1.21 .75 - 0.92 .82 -

Internalizing Problems 0.49 .48 - 0.10 .48 - 0.12 .73 - 1.34 .25 - 0.25 .62 -
Externalizing Problems 6.44 .01 1.07 (1.02, 1.12) 17.59 .001 1.18 (1.09, 1.27) 16.26 .001 1.12 (1.06, 1.18) 4.18 .04 1.05 (1.00, 1.10) 11.19 .001 1.09 (1.04, 1.14)
Parental Worry 0.62 .43 - 0.01 .94 - 2.20 .14 - 0.85 .36 - 2.46 .12 -
Family Functioning 1.23 .27 - 0.50 .48 - 0.07 .78 - 0.20 .65 - 0.70 .40 -
Seizure Type 0.44 .51 - 0.64 .42 - 1.06 .28 - 2.04 .15 - 1.53 .22 -
Page 24
Language Social Interaction Social Activity Stigma General Health
Predictors χ2 P OR (95% CI) χ2 p OR (95% CI) χ2 p OR (95% CI) χ2 p OR (95% CI) χ2 p OR (95% CI)
SES 0.09 .76 - 0.04 .84 - 2.82 .09 - 2.17 .14 - 0.02 .88 -
# of AEDs 1.15 .28 - 1.39 .24 - 4.61 .03 2.65 (1.09, 6.44) 0.02 .89 - 11.39 .001 5.38 (2.03, 14.30)
Ramsey et al.
Side Effects 0.25 .62 - 1.66 .20 - 0.06 .81 - 4.55 .03 1.07 (1.01, 1.14) 0.06 .81 -
Seizures 1.65 .20 - 2.43 .12 - 0.05 .82 - 0.20 .65 - 1.23 .27 -
Adherence 4.35 .23 - 2.26 .52 - 1.20 .75 - 3.86 .28 - 4.98 .17 -
Internalizing Problems 0.19 .66 - 2.44 .12 - <.01 .99 - 0.31 .58 - 7.50 .006 1.10 (1.03, 1.17)
Externalizing Problems 10.37 .001 1.08 (1.03, 1.14) 2.33 .13 - 0.79 .37 - <.01 .98 - 2.93 .09 -
Parental Worry 0.02 .89 - 2.83 .09 - 0.05 .82 - 0.02 .88 - 0.63 .43 -
Family Functioning 0.11 .74 - 4.92 .03 0.05 (0.003, 0.70) 1.00 .32 - 0.97 .33 - 2.44 .12 -
Seizure Type 0.11 .74 - 8.54 .004 0.11 (0.02, 0.48) 3.42 .06 - 3.94 .05 0.40 (0.16, 0.99) 0.05 .82 -
QOL Item Overall
Predictors χ2 P OR (95% CI) χ2 p OR(95% CI)

SES 0.07 .79 - 0.08 .78 − 2.27
# of AEDs 10.81 .001 4.05 (1.76, 9.33) 4.62 .03 (1.08,4.78)
Side Effects 0.05 .82 - 0.005 .95 -
Seizures 0.03 .86 - 1.62 .20 -
Adherence 4.10 .25 - 0.43 .93 -
Internalizing Problems 8.12 .004 1.09 (1.03, 1.16) 5.00 .03 (1.01,1.12) 1.06
Externalizing Problems 2.31 .13 - 3.10 .08 -
Parental Worry 0.01 .92 - 0.01 .94 -

Family Functioning 2.87 .09 - 0.02 .90 -
Seizure Type 0.03 .87 - 1.82 .18 -
a
Seizure probability trajectory groups indicating the likelihood of patients having a seizure over the two year study were previously identified and used a marker of seizure course in this study [18]
***
OR (95% CI) for the Early Severe Nonadherence Group vs High Adherence Group: 26.52 (1.82, 387.54), Variable Nonadherence Group vs High Adherence Group: 0.98 (0.14, 6.84), Moderate
Nonadherence Group vs High Adherence Group: 0.51 (0.12, 2.07), Severe Early Nonadherence Group vs Moderate Nonadherence Group: 52.49 (3.72, 741.23), Variable Nonadherence Group vs Moderate
Nonadherence Group: 1.94 (0.35, 10.64), Group Severe Early Nonadherence vs Variable Nonadherence: 27.06 (1.66, 440.83).
Page 25

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Published in final edited form as:

Predictors of Trajectories of Epilepsy-Specific Quality of Life

Cincinnati, OH, 45229, USA

Significance—Medical and psychosocial interventions, such as cognitive-behavioral strategies,

course of their disease.

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

examining correlates of HRQOL[3, 15] informed the compilation of a comprehensive set of

daily medication, 4) no parent reported developmental disorders, and 5) fluent in English.

Caregivers completed a demographics form and received an electronic monitor to measure

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

parent-reported variables: epilepsy-specific quality of life, socioeconomic status (SES), side

2.2.3 Epilepsy-specific quality of life—Caregivers completed the Quality of Life in

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

2.2.4 Psychological functioning—The Behavior Assessment System for Children-2nd

Edition (BASC-2)[20] is a reliable and valid measure of behavioral and emotional

Internal consistency reliability for the current sample was 0.83.

2.3 Statistical Analysis

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

effects, SES, number of AEDs, internalizing problems, externalizing problems, parental

3.2 Determining QOLCE Trajectories

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

The emotional HRQOL domain subscales of Depression, Anxiety, Control/helplessness, and

For the more behaviorally oriented subscales (i.e., Behavior, Attention/Concentration),

3.3 Predictors of QOLCE Trajectories

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

emotional (i.e., Energy/Fatigue, Self-Esteem, Depression, Control/Helplessness), behavioral

(i.e., Attention/Concentration, Behavior) and neurocognitive (i.e., Memory, Other Cognitive)

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

Meanwhile, Externalizing Problems predicted trajectories of emotional, behavioral, and

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

aimed to improve family functioning or stigma-reduction interventions such as

psychoeducation, cognitive restructuring, and acceptance and commitment therapies [42]

Internalizing Problems (BASC-2) and emotional HRQOL (QOLCE) and Externalizing

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

AED antiepileptic drug

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

• Most subscale models contained at least one at-risk trajectory containing up to

• Number of AEDs, Internalizing Problems, and Externalizing Problems emerged

• Medical and psychosocial interventions should target modifiable factors shortly

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

Baseline (n = 94) 25 monthsa (n = 84)

Child age (years) 8.14 2.37 7.16 2.73

Family Duncan scoreb 53.15 19.95 55.54 20.16

Black 18 19.1 13 15.5

Generalized 1 1.1 1 2.2

Epilepsy Behav. Author manuscript; available in PMC 2017 April 01.

Final Trajectory Models for QOLCE overall and subscales

Group (%) Parameter Estimate (95% CI) t p

QOLCE Physical Restrictions (k = 3)

Int 84.4 (77.0 – 91.8) 22.43 <.001

Int 68.2 (65.1 – 71.3) 43.20 <.001

Int 55.5 (51.3 – 59.7) 26.11 <.001

Quadratic 0.145 (−0.129 – 0.419) 1.03 .30

Int 87.2 (84.4 – 90.0) 60.28 <.001

Int 80.9 (78.3 – 83.5) 60.24 <.001

Int 62.6 (57.1 – 68.1) 22.34 <.001

Quadratic 0.072 (−0.289 – 0.433) .39 .70

Int 94.3 (86.7 – 101.9) 24.33 <.001